Two weeks in hospital: Swapping to a neurodisability lead consultant & what is parallel planning?

So, it’s been a while! I apologise and hope you’re forgiving enough to keep sharing my blogs in hope of helping anyone else in my position mothering a sick baby.

What’s new? WELL..

Since Great Ormond Street (GOSH) we had a two-week admission at the beginning of February. He went in with a high temperature which turned out to be due to urine infection number 5. Yep, 5 urine infections in 6 months. This is due to his Grade 4 bilateral kidney reflux (basically urine goes from the bladder back up to the kidneys causing infection). We then were kept for vomiting and other hospital bugs – yay. They scanned his heart again whilst we were in and surprise surprise it had got worse since being seen at GOSH in January.

I didn’t think much of it, that was the norm for him now to have the ever-growing heart that despite concerns, he visually showed no symptoms of. But then we swapped from a general consultant to a neurodisability consultant. I recall this being mentioned as a possibility way back when he was a couple of months old and they found the cysts on his brain. His previous consultant had explained she was a general pediatric consultant and if the cysts were to cause disability then he would benefit from a specialist in the field. Since that discussion he’d had the 1p36 deletion syndrome diagnosis and shown development delay. His smile not coming until he was 3 months (better late than never, that smile gets me through A LOT) and physically at 6 months he still wasn’t holding his head, rolling or pushing up on his stomach. With 2 diagnosis (CMV and 1p36 deletion syndrome) the likelihood of disability was high and so she handed Jaxon over. I recall in October when the cysts were discovered, being terrified of development delay and disability. Those cysts seemed like the worst thing in the world and so overwhelming. I just wanted my baby to be “normal” and healthy, disability threatened everything; all of the “look at those long legs kicking he’s going to be a footballer” hurt and the prospect of changing from a mother to a life-long carer threatened both of our lives. But now, it really is just taking each day as it comes and after his heart diagnosis, being told he could die any day really shifted my concerns. Plus, it helps that he’s HAPPY. At the end of the day, no matter what he can or can’t do, if he’s happy – I’m happy. Anyway, the switch in consultant plus the worsening heart condition led to the mention of parallel planning.

Parallel planning is when two healthcare plans are made alongside each other for two different possibilities. Bluntly, there is a plan in place for if Jaxon lives long-term with disability, and a plan for if he doesn’t make it (Jesus that was hard to write *deep breath*). The plan for long-term disability isn’t really a plan it’s just our current situation; he’s on 6 medications 9 times a day, he is fed through a tube and he has hypotonia (muscle weakness). The other plan consisted of writing a personal resuscitation plan (PRP) which explains to other doctors what kind of resuscitation is agreed for Jaxon. It was said that this is because if Jaxon had a cardiac arrest, a doctor that doesn’t know him may look at his medical diagnosis and not know if he is for resuscitation – crazy right? Personally I think his consultant was simply introducing me to the plan as right now he is for full resuscitation. I feel she may have been warming me up to so that if his condition gets worse and the plan needs changing then at least I’m familiar with the paperwork and it’s not new news, you know? So his current plan is full resuscitation but his cardiologist advised in future it may be changes such as ‘full resuscitation for a maximum of 5 minutes and then Jaxon is to be handed to mum’. This would be because if 5 minutes didn’t work they wouldn’t think any longer would and therefore to give me the time with him (writing this out is proving to be strangely difficult, I’m always so clinical and matter of fact with the doctors). I’ve seen resuscitation before, I’m aware of how gruelling and aggressive it can be so I understand this. I also understand that the piece of paper with this plan on could go out the window in an instance should we find ourselves in that position. I could quite easily be yelling at them to leave him alone sooner or telling them not to stop. Hopefully, we’ll NEVER need that plan. The plan also included whether he’s suitable for organ donation (he doesn’t have any organs functioning well enough) and coroners reports (due to his diagnosis an autopsy wouldn’t be required).

I’m sure many of you read that last paragraph like woah. I know. It’s overwhelming sometimes. But it’s SO crazy and SO overwhelming that I have no choice but to take it in my stride. At the end of the day, what does me worrying about all of this do? If anything, me worrying threatens Jaxons care. If I’m not 100%, neither is he. Then we’re screwed. So I sat down with the consultant, discussed the options, ticked the boxes, signed on the dotted line and was grateful that he’s for full resuscitation. Yes, grateful. Grateful for something most people will never have to even contemplate. BUT. It could be a lot worse. Signing for what could happen is not nice and I’m human I shed a healthy amount of tears. But those tears are fear of what may happen. No one is telling me he’ll need that plan. It’s a precaution. So I’m not wasting time I have him here smiling at me, dwelling on a piece of paper.

After all of this. Two weeks after admission on a Friday afternoon, when Jaxon was ready to go home, we had a discharge planning meeting (DPM). A DPM aims to include all the professionals involved in his care, and myself, to go through how we can keep him out of hospital. I went home and believed we wouldn’t be returning for a while.

The following Monday morning just three days later, about an hour after his feed, he started vomiting blood. An ambulance arrived in under 10 minutes and that was the start of a long two months in hospital to come.. next blog post on our two month stay includes a negligence complaint, why we’ve been here so long and the big operation we’re going for in Leicester this week!

If you’ve made it this far – thank you for reading!

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